{"id":21,"date":"2014-07-15T13:45:00","date_gmt":"2014-07-15T13:45:00","guid":{"rendered":""},"modified":"2016-06-10T14:28:10","modified_gmt":"2016-06-10T14:28:10","slug":"in-the-beginning","status":"publish","type":"post","link":"https:\/\/dhr.tiltedchair.co\/?p=21","title":{"rendered":"In the beginning…"},"content":{"rendered":"\n\n\n\n
<\/a><\/td>\n<\/tr>\n
Dr. Jerome Lejuene, discoverer of cause of Down syndrome<\/em><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

I discovered I was pregnant with my fourth child very early in February of 1984.\u00a0 I was 42 and certainly not expecting to be expecting, but Jerry and I rolled with the punches and were soon changing our life course and making new plans.<\/p>\n

Those plans didn’t include the possibility of abortion.\u00a0 The reasons for that are complex, because we were not members of any organized pro-life movement or organization.\u00a0 It’s more that we just loved new life, whether\u00a0it came in the form of a seedling peeping up out of the ground, a litter of puppies, or…a baby.<\/p>\n

So I rejected the amnio that would have told me our little one\u00a0was busy developing an overabundance of chromosomes.\u00a0 Midway through the pregnancy, I even had a mystical experience that I felt told me the baby would be a girl with Down syndrome.\u00a0 But no matter. Life is life.\u00a0 I figured if the universe bothered to tell me about it, it would tell me what to do about it.<\/p>\n

In September of 1984, here came Miss Kelly Page Horton, 8 pounds, 7 ounces, bald and beautiful.\u00a0 It was obvious from the moment she popped into the world.<\/p>\n

Frankly, we were less than thrilled.\u00a0 We were just getting back on our feet a few days later when we got news that she might have neo-natal leukemia.\u00a0 At that point the mom and pop tiger genes in us rose up and roared and we knew we wanted this baby in no uncertain terms.<\/p>\n

When Kelly was five weeks old, the National Down Syndrome Congress<\/a> convention came to San Antonio.\u00a0 Daughter Martha and I drove down to see what we could learn.<\/p>\n

Talk about a revelation!\u00a0 A doctor from the City of Hope<\/a> in Duarte, CA, informed me that Kelly didn’t have leukemia,\u00a0but a “leukemoid reaction<\/a>,” fairly common at birth in Down syndrome.\u00a0 He also said it would go away without treatment and she would bear no uncommon risk in the future.\u00a0 Whew.<\/p>\n

But we had also just received Kelly’s karyotype, which showed, most curiously, four<\/em> No. 21 chromosomes.\u00a0 This was, needless to say, worrisome to us (and unheard of\u00a0by our physicians).\u00a0 If one extra chromosome could gum up the works, what would two do?<\/p>\n

Fortunately, the very man who discovered the cause of Down syndrome was present at the conference.<\/p>\n

Jerome Lejuene was a French researcher, who in 1958 identified that an extra 21st chromosome causes the syndrome named after the man who first described it, John Langdon Down.<\/p>\n

When I read that\u00a0Lejuene was presenting a plenary session, I imagined he must now be very old, and I was surprised by the youthfulness and vigor of the man who stepped in front of the microphone.\u00a0 In fact, at that point he was 57 years old; he had made his discovery at 34.<\/p>\n

Unfortunately, the combination of his strong French accent, my own rather poor hearing, and the acoustics of the hall ensured that I caught very little of his message.\u00a0 Still, I figured he would be interested in Kelly’s karyotype, and I was interested in his take on it, so I stood in line to speak with him.<\/p>\n

When my turn came he smiled and welcomed the paper I handed him.\u00a0 He knew immediately of my concern, even before I said anything.\u00a0 I will never forget his warmth and compassion as he explained\u00a0that\u00a0he felt certain she would develop typically\u00a0as a child with Down syndrome.\u00a0 I\u00a0could feel that\u00a0I was in the presence of someone very special.<\/p>\n

First of all, he had come all that way to be with us, a random clutch of moms and dads with one thing in common.\u00a0 It amazed me that he would do that.\u00a0 I doubted that most scientists who had made a discovery of such monumental importance would bother much with the real-life consequences.<\/p>\n

But as it turns out, Jerome Lejuene was far from typical in that respect.\u00a0 In a sense, he spiritually adopted each and every child born with Down syndrome, and he cared deeply about their lives.\u00a0 As pre-natal tests were developed to identify, and in most cases, eliminate the growing baby with Down syndrome. he began to speak out for their right to live.<\/p>\n

The scientific community did not share his view, and over time he was in effect shunned, viewed as unprofessional, no doubt.<\/p>\n

Yes, I was indeed in the presence of someone very special.\u00a0 Today the\u00a0Jerome Lejuene Foundation<\/a>,\u00a0established in his name, works on behalf of people with Down syndrome, funding medial research to work for “care and a cure.”<\/p>\n

There is also a movement working to recognize the sainthood<\/a> of Jerome Lejuene.\u00a0 That he was one, there is no doubt.\u00a0 I didn’t\u00a0identify it at the time, but it’s what\u00a0I felt in his presence: exceptional holiness.<\/p>\n

He wrote:\u00a0\u00a0Human genetics can be summarized in this basic creed:\u00a0 In the beginning is the message, and the message is in life, and the message is life.\u00a0 And if the message is a human message, then the life is a human life.<\/em><\/p>\n

Amen.<\/p>\n

Picture credit:\u00a0Fondation Jerome Lejeune via Wikimedia (CC BY-SA 3.0).<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

Dr. Jerome Lejuene, discoverer of cause of Down syndrome I discovered I was pregnant with my fourth child very early in February of 1984.\u00a0 I was 42 and certainly not expecting to be expecting, but Jerry and I rolled with the punches and were soon changing our life course and making new plans. Those plans…<\/p>\n","protected":false},"author":7,"featured_media":675,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10,13,8,7,11,12,9,14],"tags":[],"class_list":["post-21","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-city-of-hope_duarte","category-down-home-ranch","category-down-syndrome","category-jerome-lejuene","category-jerome-lejuene-foundation","category-national-down-syndrome-congress","category-right-to-life","category-trisomy-21"],"_links":{"self":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts\/21","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=21"}],"version-history":[{"count":0,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/posts\/21\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=\/wp\/v2\/media\/675"}],"wp:attachment":[{"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=21"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=21"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dhr.tiltedchair.co\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=21"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}